In 2024, IPPF Patient Educators reached 1,390 medical and dental students, with 78% of the students saying the presentations will influence their clinical decisions. Your donation saves lives and brings knowledge into classrooms. Donate now: www.pemphigus.org/donate #pemphigus #pemphigoid #healourskin
International Pemphigus Pemphigoid Foundation
非盈利组织
Roseville，California 1,896 位关注者
Improving the quality of life for all people affected by pemphigus and pemphigoid through early diagnosis and support.
关于我们
The International Pemphigus & Pemphigoid Foundation (IPPF) is a registered 501(c)(3) not-for-profit organization and the preeminent global organization dedicated to improving the quality of life of all people diagnosed with, or affected by, pemphigus or pemphigoid. Pemphigus and pemphigoid are autoimmune blistering diseases where the blisters form on the body, mouth or eyes as a person’s immune system attacks itself. The IPPF serves patients through a network of trained Peer Health Coaches (PHC). PHCs cover different disease types, time zones, genders and languages to answer questions and guide patients through an ongoing “health management” experience. The IPPF engages in awareness and education projects focusing on patients, caregivers, and medical professionals. The IPPF also provides resources for research addressing mechanisms, relapse-trigger identification, disease treatment,and ongoing pharmaceutical and bio-scientific exploration. MISSION: The IPPF provides direct access to innovative and effective support that promotes the very best health care, improves quality of life, stimulates community resources, advocates for favorable government policies, accelerates the pace of scientific discovery and is the world’s best source of information on pemphigus and pemphigoid. We are compassionate in understanding, tireless in service, and relentless in advocating. One person at a time, we make a difference, building a community of care and hope.
- 网站
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https://www.pemphigus.org
International Pemphigus Pemphigoid Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Roseville，California
- 类型
- 非营利机构
- 创立
- 1994
- 领域
- patient support、awareness、advocacy、physician referral、outreach和education
地点
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主要
获取路线
915 Highland Pointe Dr
US，California，Roseville，95678
International Pemphigus Pemphigoid Foundation员工
动态
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Registration is open for the March 31st Scientific Seminar Series webinar! The Scientific Seminar Series is a scientific educational program with experts from various international institutions that present on their scientific findings on #pemphigus and #pemphigoid. Register today: https://loom.ly/eCqvco0 #healourskin
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International Pemphigus Pemphigoid Foundation转发了
#Congress is considering cutting critical funding to #NIH and #FDA, two institutions essential for researching and approving new #RareDisease treatments. Ask your representatives to protect this funding, here: https://lnkd.in/eS58MV3M With less than 5% of #RareDiseases having approved treatments, now is not the time to stop investing in this work. Thank you for using your voice!
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International Pemphigus Pemphigoid Foundation转发了
Outreach Director | International Pemphigus & Pemphigoid Foundation | Demonstrated Success in Patient Advocacy and Providing Educational Opportunities to Healthcare Professionals, Students, and the Rare Disease Community
Honored and grateful to the AAD for the opportunity to speak at the State Derm Society lunch on Friday. It was a privilege to raise awareness for the Pemphigus and Pemphigoid community at the 2025 Annual Meeting and continue conversations on issues affecting the IPPF community. #Dermatology #Pemphigus #Pemphigoid #healourskin
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International Pemphigus Pemphigoid Foundation转发了
?? CONFERENCE HIGHLIGHTS: Data from the ADEPT phase 2/3 study found #dupilumab effective for adults with moderate to severe bullous pemphigoid, meeting primary and secondary end points, according to late-breaking data presented at #AAD2025. https://lnkd.in/gyd-wF2E
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Important update from the American Academy of Dermatology Annual Meeting today.
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Every year, we travel to the annual meeting of the American Academy of Dermatology to represent the patient voice. A major highlight is partnering with Dedee Murrell MD DSc and Victoria Werth to host a meeting of the International Bullous Disease Expert Group. These are the global experts working on the cutting edge of understanding and treating these diseases. What started many years ago as a small gathering of dedicated physicians and researches has grown into a group of over 50 experts from around the world! #pemphigus #pemphigoid #healourskin
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When someone connects with an IPPF Peer Coach, everything changes. They connect with another person who knows what it's like to have these diseases. Your donation connects patients to life-changing support when they need it the most. Donate today! www.pemphigus.org/donate #healourskin
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International Pemphigus Pemphigoid Foundation转发了
March is Autoimmune Awareness Month – and with over 50 million Americans affected by autoimmune diseases, chances are, someone in your workplace is living with one. Autoimmune diseases are often invisible, meaning a colleague might be facing fatigue, pain, or other debilitating symptoms that aren’t obvious to others—all while continuing to show up, work hard, and contribute every day. During Autoimmune Awareness Month, take the time to learn more about these conditions, how they affect those around you, and what you can do to help create a more inclusive, supportive work environment. Simple actions like offering flexibility, encouraging open conversations, and recognizing the impact of chronic illness can make a world of difference. https://lnkd.in/eJY_g7TH
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A huge thank you to Dr. Mark Mintline for an insightful presentation and to Dr. Maverakis for providing lunch at the in-person Northern CA support group meeting in February! This was the first IPPF in-person support group meeting since 2019. #healourskin #pemphigus #pemphigoid
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